Teleassistance and health related quality of life in people with neuromuscular diseases

2. Research lines:
1) Tele-assistance - people with neuromuscular disorders.
2) Serious games - children.

3. Extracted from: 1. Journal of Telemedicine and Telecare, 2. Cognitive Behaviour Therapy, 3. Perspectives in Psychiatric Care

4. Extracted from: 4. Neurological Sciences, 5. Disability and Rehabilitation

5. Myasthenia Facioscapulohumeral
Gravis Muscular Dystrophy
Linb-Girdle
Becker Muscular
Muscular
Dystrophy
Dystrophy

11. • Myasthenia Gravis (n=29)
• Others: Facioscapulohumeral Muscular
n= 45
Dystrophy, Becker Muscular Dystrophy, Limb-
girdle Muscular Dystrophy, etc. (n=16)
Exp. Gr. Contr. Gr.
Sample Total (n=45)
(n=24) (n=21)
Male 23 11 12
Gender
Female 22 13 9
Mean 50.56 45.38 56.48
Age Standard
14.075 11.798 14.379
Deviation

12. Structured
Sociodemographic and health data
Interview
• SF-36 health survey questionnaire
Health Status • EuroQoL-5D (EQ-5D)
• Sickness Impact Profile (SIP)
World Health Organization Disability
Disability Assessment Schedule II (WHO-DAS II)
Social
The MOS social support survey
Support

13. Anxiety/
The Hospital Anxiety and Depression Scale (HAD)
Depression
Self-efficacy General Self-Efficacy Scale (GSE)
Coping The COPE Inventory
Stressful life
The Holmes and Rahe Stress Scale
events

14. Group videoconference with a
1 psychologist
Individual videoconference
2 with a neurologist
Forum about biopsychosocial
3 topics

15. Group videoconference with a
1 psychologist
 1 hour session
every two weeks
 7 sessions
 4/5 participants
per group
 Program used:
Skype

16. http://www.eitb.com/es/videos/detalle/809203/ed-asistencia

17. Online sessions
1. Emotional reactions during neuromuscular disease:
Stress: distress, eustress; Anxiety: physical, cognitive and
behavioral symptomatology; Anger to other and to
oneself; Sadness; Fear; Hope.
2. Negative automatic thoughts:
Definition; Consequences: negative emotions, adaptation
difficulties; Detection of negative thoughts and change for
alternative ones.
3.Guided visualization.
4. Problems solving skills:
Practical examples of problem definition and formulation;
Generation of alternative solutions; Decision making
process; Solution implementation and verification

18. Individual videoconference
2 with a neurologist
 Once every week
 Individual sessions
 Mean duration of each session: 15 minutes
 Aim: to solve general doubts about the
disease

19. Forum about biopsychosocial
3 topics

22. p < .05

23. p < .05

24. p < .05

27. p < .05

29. • Sample not randomized
• Difficulties obtaining the sample due to diagnosis
delay, geographic dispersion, low prevalence, etc.
• Participants who had access to a computer and
internet only benefited
• Computer illiterate participants did not benefit
• People with higher levels of disability demand this
type of assistance more than those with lower levels
• Technical problems

30. Health-related quality of life is improved
Feeling of isolation can be reduced
Health care costs can be reduced
High levels of satisfaction

31. • Dr. Gerd Ahlström (Professor of the Faculty of Health Sciences and Dean of the University of
Jönköping, Sweden)
• Dr. Giovanni Meola (Prof. in Neurology at the University of Milan; Head of the Department of
Neurology at the San Donato Policlinic Institute, Milan, Italy)
• Dr. Corrado Angelini (Prof. of the Neuroscience Departament of the University of Padova; Head of
the Department of Neurology at the San Antonio Hospital, Padova, Italy)
• Louise Hastings (Nurse specialized in genetics of the Newcastle Muscle Center, University of
Newcastle, Great Britain)
• Dr. Urtizberea (Physiotherapist of the Marine Hospital of Hendaya, France)
• Patricia Jouinot (Psychologist of the Department of Pediatrics, Intensive Care and Neurorespiratoy
Care of the Raymond Poincaré Hospital, Garches, France)
• PhD. Andone Sistiaga (Neuropsychologist and Professor of the Department of Basic Processes and
their Development of the Faculty of Psychology of the UPV- University of the Basque Country)
• Dr. María García Barcina (Head of the Genetics Unit of the Basurto Hospital, Biscay)
• PhD. Natalia Martín (Faculty of Psychology of the University of Valladolid and Member of the
Spanish Association of Myasthenia Gravis)
• Dr. José Bárcena Llona (Department of Neurology of the Cruces Hospital, Biscay)
• Dr. Luis Varona Franco (Department of Neurology of the Basurto Hospital, Biscay)

32. Neuro-e-motion
Neuromuscular and
Neurodevelopment Disorders
Research Group
Neuro-e-Motion
Faculty of Psychology and Education
UNIVERSITY OF DEUSTO
PhD. Imanol Amayra (University of Deusto)
PhD. Juan Francisco López-Paz (University of Deusto)
PhD. Patricia Caballero (University of Deusto)
PhD. Luis de Nicolás (University of Deusto)
PhD. Alberto Lasa Zulueta (University of Deusto)
BA. Esther Lázaro Pérez (University of Deusto)
BA. Amaia Jometón Elorriaga (University of Deusto)
BA. Oscar Martínez Gutiérrez (University of Deusto)
BA. Imanol Pérez Álvarez (University of Deusto)

33. Thank you